TwinsUK: A longitudinal epidemiological and genomic resource

TwinsUK is a large research study investigating health and ageing and the impact of the environment. Twins are ideal participants in health research because they share DNA: identical twins share 100% of their DNA, while non-identical twins share 50%. This means we can make comparisons between identical and non-identical twins to understand the influence of genetics and the environment on health and ageing - i.e., 'nature and nurture'. Moreover, by studying changes in twin pairs as they develop through life, twin studies have a unique place in studying how our internal and external environments shape ageing and health.

Right now, our world is undergoing significant changes in environment as we grapple with major shifts, such as the COVID-19 pandemic, climate change (and measures to combat it), and economic instability. Inside our bodies, these may have impact right from how our DNA is used, through to whole body function and onset of disease. Few studies in the UK have the depth of capture of all these levels, measured longitudinally, or the unique twin design to help separate the influence of the genetic code itself. Our study therefore provides a rich and unique resource to scientists across the world to understand the interplay of all these factors, as shown by our extensive collaboration and data sharing.

We set up TwinsUK in 1992, and 16,000 adult twins from across the UK have volunteered to take part (currently over 10,000 twins actively participate). We have collected extensive genomic, health, lifestyle and environmental data and biological samples such as blood and stool from participants at multiple time points over the 30 years. We know from feedback surveys that TwinsUK participants are proud to be twins and proud to be able to contribute uniquely to research as a result. This has led them to demonstrate long-term commitment, be highly engaged, recallable and volunteer willingly for intensive studies. Our twin participants are therefore very important and valuable long-term contributors to health research.

Managing TwinsUK, including maintaining our data and sample collections, requires many people working together across our administrative, clinical, data and engagement teams, as well as academic researchers. With this grant, we hope to maintain our highly successful scientific resource: 80% of the requested infrastructure funds will continue essential staff salaries in maintaining and sharing the resource.

We aim to continue to be the twin cohort with the most comprehensive data available to scientists to use in the world. In order to get the most scientific benefit out of our twins' donated data and samples, we securely share our research data with the scientific community, obviously ensuring confidentiality and never share names or addresses. We offer an unrivalled access to sharing both data and samples: we have shared data & samples with more than 1,800 researchers, and the resource has produced over 1,000 scientific publications. This ensures we make the most out of our twins' contributions and enables us to contribute to more health research all over the world.

In the next five years we plan to enhance the resource with further data sharing collaborations. In line with the MRC review on "maximising biomedical data science opportunities", we continuously strive to increase visibility, discoverability, accessibility, and timeliness of our data. In addition, the core infrastructure of this LPS award will enable further scientific research through grant applications and allow TwinsUK to answer important questions, such as the future of our sustainable health through diet and lifestyle studies to address important global challenges.

This LPS grant will therefore both enhance the scientific value of TwinsUK and enable us to provide a unique international collaborative resource with huge potential for research across the life-course.

TwinsUK is a national longitudinal study examining the impact of environment and genomics on healthy ageing and age-related disease. As well as extensive 'omics, the value of the cohort is its unique twin model, separating the effects of shared genetics and early environment from later-life exposures or stochastic changes. TwinsUK was founded in 1992, comprises 16,000 volunteer twins aged 18-104 (median 61 years, IQR 26) who are highly engaged, demonstrate long-term commitment, and volunteer willingly for intensive studies. Over 750,000 biological samples and extensive phenotypes have been collected over 30 years. In the 2014 MRC Strategic Review of UK Population Cohort Studies, TwinsUK was "one of the most comprehensive and extensive in range of depth of multiple phenotyping and "omics" of any cohort." Longitudinal data collection continues through clinical visits, questionnaires, remote sampling and data linkage, supported by a strong engagement programme.

TwinsUK has an exemplary track record in data and sample sharing via supported access internationally, discoverable in multiple platforms and directories across the globe. Over 1,800 data access requests and 250,000 samples have been shared with external researchers, producing >1,000 publications in the last 10 years. The TwinsUK biobank includes blood, excreta, secreta, tissue biopsies and swabs, generating genetic, deep tissue transcriptomic and epigenomic, metabolomic, proteomic and metagenomic data, extensively used by the scientific community and continually updated. Data linkage to electronic health, education and environmental records complements the resource's extensive phenotype dataset and extends its future scientific capability. TwinsUK continues to innovate in population health research (e.g. the ZOE COVID app) developing the latest digital solutions. This LPS Award will support the key infrastructure enabling the maintenance, management and enhancement of this resource over the next five years.